Can anybody shed any light on this??

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Hi All

I am new to this website.I have been unwell for some considerable time but only fully diagnosed with SLE a couple of months ago.I alreay have two other autoimmune problems (multi connective tissue disease). In addition to my existing tablets I have been given hydrocholiquine tablets. I understand there a long list of different symptoms and not everybody has the exact same list. For the very first time in a number of years I am not struggling with mouth and nasal ulcers. The one thing I am struggling with is constant temperature flares. Very embarrassing at times as I have to dress in layers so that I can frantically remove them to try and cool off!!!! My colleagues at work think I am in the throes of menopause - but I am way passed that!!! The nights are at night time. Sleep is the most diffiult to achieve at the best of times but this is making it worse. If anybody can throw any light on this I would be most grateful.

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    Oh my gosh Jean, it's so nice and scary to know how many of us are in such pain and yet I never see any commercials about mixed connective tissue disease. I was diagnosed with mixed connective tissue disease, lupus, fibromyalgia and ranoids about 11 years ago. I have seen around 30 Doctors who have all given me different things like medicine. I saw a Doctor once that I had to pay 4,000 up front because my insurance didn't pay for it. I was basically put on a table and stretched and then I would put my feet in this water and it turned orange because it was trying to get the toxins out. I even heard about this one man who had cancer and sat in front of these rocks (I'm sure they were called something magical) and just sat there for an hour and I know you'll find it shocking when you hear that it didn't do anything, nada, crap so I have tried so many things. One Doctor put 16 shots of glucose in each leg every week and shockingly enough that didn't work. I'm not sure he was really a Doctor (ha). I am now seeing a pain Doctor. For so many years I would wake up every morning feeling like I had the flu. I just wanted to die. No energy, it hurt to walk, it hurt to sit, it hurt all the time, especially my legs. Lord they hurt so bad, I was so depressed. When you're in pain you don't care if your liver drops out of your body, you just want the pain to stop. My pain Doctor has me on Lyrica, oxycodone, fentenal (sp) patches, Zoloft, Wellbutrin and to sleep I take temazapan. This was the last thing I wanted to do was to take all those drugs but I'm not in all that pain I was in. I'm not saying I feel so perky now but I'll take anything other than that horrible pain in my legs and elbows, wrists and shoulders. I used to be so active, worked out all the time, took care of my 3 babies and now I'm still tired and I have to absolutely force myself to get up and do anything but I'm trying. I feel like my kids think we'll if mom doesn't have to work than why should I. It's hard, in the last year I've lost my beautiful 19 year old son and got divorced because my ex just couldn't understand nor wanted to understand about what I was going through. His solution was oh just get over it and go get a job. (True supporter he was, haha). I truly feel I accumulated all of my diseases from stress. I was never in a car accident or never hit my head and just last week I saw a Doctor who said whe absolutely believes that and if I can start doing yoga I will get better. I'm out of a toxic relationship and although this hole in my heart for my son will never, ever go away, I'm going to go to a work out place this Thursday and they are going to show me around the yoga studio and I'm going to pay for it even though I could use that money for my kids, I know if I could get one ounce of who I was before I married someone I wasn't really even in love with, it will give me some hope. I'm sorry for going on and on but like so many of us have said even though some of us have the same diseases, it seems to be different for all of us. I just learned that stress can truly cause all sorts of bad things or if you have family members that have passed the disease on but that wasn't my case. It was just stress, doesn't that sound so stupid? Anyway I hope you find something or one Doctor that helps and believes you. Good luck to you but know there are so many of us out here feeling pain also. That probably doesn't help, I would be like yea well I'd rather somebody else be in pain and not me. Lol

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